Potential Barriers and Challenges

fundING

• Reasonable adjustments in an ID trial require funding for additional time and resources (e.g. extra staff, easy read documents and other communication aids, specialist equipment); some funders do not always understand or appreciate the importance and cost of these adjustments.
• Recruiting large numbers of participants can be difficult with ID RCTs, particularly when focusing on a specific disorder or syndrome.  Many research groups have begun conducting multi-site studies.  Partly because of this, coupled with the implications of making reasonable adjustments, some funders may not see ID-RCTs as a cost effective use of research money.
• Because of the unique needs of people with ID, many of them rely of a number of sources of support for their daily living activities.  So too with participating in research studies.  Thus when recruiting participants with ID into a clinical trial, researchers may also have to recruit support providers and often professional health care staff.  This all adds exponentially to the recruitment costs and time required per participant.  Current models of assessing the cost-effectiveness of research applications do not favour ID-RCTs.

Helpful Hints and suggestions

• Reasonable adjustments in an ID trial require funding for additional time and resources (e.g. extra staff, easy read documents and other communication aids, specialist equipment); some funders do not always understand or appreciate the importance and cost of these adjustments.
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